Living with cancer blog

Living in unknown territory: Rare cancers

If you're diagnosed with a rare or unusual cancer, it's not easy to figure out how you fit in to the mainstream of cancer care.

Hearing that you've been diagnosed with cancer is hard enough, but when your doctor tells you that your cancer's rare, it's not easy to feel comfortable about your next steps.

You may find that doctors, nurses and other cancer patients have never heard of your type of cancer. It may be difficult to find information and resources to guide your treatment choices. This is when it's important to ask questions and take steps to find a cancer specialist who understands your cancer type and others who can help support you along the way.

Here are a few ideas on what you can do:

Ask your doctor for a referral to an NCI-designated Cancer Center where it's more likely that they've had experience with your cancer type. If this isn't offered to you — do your research and ask for help from others. NCI has excellent resources and a listing of NCI-designated Cancer Centers on its website or call 1-800-4CANCER.

Seek a second opinion — rare cancers can be difficult to understand and treat. A second opinion will give you reassurance that you're going in the right direction with treatment. You may want to ask for a second opinion using new technology such as an e-consult or telemedicine to save on costs.

If you need financial assistance, look for resources from organizations and foundations designed to help you such as the Cancer Financial Assistance Coalition, Patient Advocate Foundation and Cancer Care.

Look for peer support from patient support groups online, such as the Cancer Support Community, the Rare Cancer Alliance or Imerman Angels.

Cancer survivors find great support from each other by sharing experiences, thoughts and feelings. Many times, the most value is in finding someone else to talk to who's experienced a similar situation. Reach out to others through social networks and general support groups.

Look for opportunities to volunteer or be an advocate for other cancer survivors. In doing this, you may find the people you meet along the way become your personal support group, regardless of cancer type.

Many of you have written words of wisdom to each other on the blog regarding rare cancers. What have you found helpful?

27 Comments Posted

I was diagnosed with extra mammary Paget's disease after having an innocuous cyst removed. How blessed to have decided to have that cyst removed otherwise the Paget's would have been far more advanced and been causing symptoms. I saw my gyn/onc. He recommends watchful waiting or Aldara cream. Neither seemed good to me so I did some further research and ended up at the U of Michigan Multispecialty Cutaneous Oncology Clinic. Their recommendation is further surgery as the margins on the original biopsy were not clear. The surgery will be done by the plastic surgeon specializing in oncology and he will do skin graft if needed during that surgery. My question is which of these two recommendations sound like the best treatment? How does one make a decision -- by intuition?

Eileen Jeanette

February 18, 2014 1:28 p.m.

Hi Sheryl:
I am looking for a surgeon at Mayo Jackosnville, FL that has done the MOST thyroidectomies. I have a 15 yr old that I would like to get a second opinion about. Diagnosed with hurthle cells (30% possibility of being malignant). FNA is inconclusive. Will need to have the "hemi" procedure done and maybe a full (hopefully not).
Also--- about your Hairy Cell Leukemia person. I was diagnosed 10 years ago. unfortunately I relapsed last September, but just finished treatments for the second time. I'd be glad to talk with anyone needing help, advice or just encouragement. I was 42 when first diagnosed.
thanks,
David

David S.

November 4, 2013 7:10 p.m.

Hi Erin, I am glad that you are writing in again...and so happy to see that you are doing well. I found the Thymic Cancer Research site has a great forum for patients, as well as a place to look for clinical trials and share your stories. Take a look here http://www.thymic.org/?page_id=32. Maybe you have already found this resource. I was impressed by what they are offering patients. Hope this is helpful. You may also want to read the Living with Cancer blog discussions on living with metastatic cancer (http://www.mayoclinic.com/health/metastatic-cancer/MY01926) and survivor guilt (http://www.mayoclinic.com/health/cancer-survivor/MY01370).

Sheryl Ness

October 31, 2013 8:18 p.m.

I posted here in March that I suffer from Thymic Carcinoma.Unfortuneatley I see no one else has signed on, that was possibly hoping to much. Last nov.my Dr. said the cancer was back and I had about a year.It has been &quot;about a year&quot;. I continnue to amaze my Dr. with minimal growth.this is not the first time I have beat the odds! It is WONDERFUL but.....it kind of messes with your head and I feel I am walking a very fine wire. If anyone is willing to share how do you handle it?

Erin

July 15, 2013 1:25 p.m.

Nan, send me an e-mail at ness.sheryl@mayo.edu and I will send you information and options for a Hematologist who specializes in Hairy Cell Leukemia at Mayo Clinic.

Sheryl Ness

July 9, 2013 1:30 p.m.

I posted an earlier comment on Hairy cell Leukemia. Is there a Dr. at Mayo Clinic that works with HCL Variant? I feel I need to be proactive on this and there is very little information online. My Dr is working with M D Anderson but I'm looking for all the possible information. Thank you

Nan

June 26, 2013 5:58 p.m.

I have been diagnosed with ampulla of vator cancer. This is very rare. I had Whipple surgery last year and was in remission for six months. The cancer has returned again in the liver. Does anyone know anything about this cancer or survival rate.

Lou

June 18, 2013 3:47 p.m.

Hi, I am a 53 year old female and was diagnosed on march 4th with 4 poorly differentiated synchronized adenocarcinoma of my stomach and colon from a routine colonoscopy and endoscopy. They are er/pr positive and her2 neg. my doctors thought it metastisized from my breast but now are testing ovaries. All of my tests and scans come back negative and i have no tumors. Every doctor that I see says they have never seen this before. I am currently taking letrozole. I am reaching out to find a doctor that has treated someone like me. I would appreciate any information you may have for me. Thank -you

Donna

May 18, 2013 6:34 p.m.

My Mother has a vaginal tumor. She also has diarrea constantly. The doctor has said she has stage four and we have put her on hospice. Her stool is like water and has an onion odor. It is also black as tar. Does anyone have any idea about this? We have not had a pet scan run since her diagnoses.

Deborah

April 30, 2013 5:37 a.m.

I have mastocytosis and just been diagnosed with a lobular carcinoma in my breast. I had a masectomy this week. can anyone give any insight into the mastocytosis. A problem as this was the first cancer diagnosed and now the second one has come along.

Cheryl

April 24, 2013 12:14 p.m.

My husband was diagnosed with colon cancer. The polyps containted two cancers: adenocarcinoma (commonly found in the colon) and neuroendocrine carcinoma (aggressive and rare). One third of colon removed and now undergoing chemo. Is there a doctor at Mayo that specializes in neuroendocrine cancer? Anyone else out there who has had this type of cancer?

Janell

April 18, 2013 7:53 p.m.

Have contacted the Melbourne Cancer hospital which is a leading research group in Australia. They also do not know or have any experience with the rare cancer. Has anyone in the USA got any insight on the Sebaceous cancer growing inside a person rather than on the skin area?

Clem

April 16, 2013 5:29 p.m.

My mother has had a Sebaceous cancer removed from her breast area. which was 4.3cm big along with healthy clear tissue. Also informed that the surgeons that they have never seen anything like it before. Does the Mayo Clinic have any experience with this form of cancer and if so what was the recommended treatment?

Clem

April 8, 2013 3:17 p.m.

Hi Eunice and Paulette, feel free to both send me your e-mail at ness.sheryl@mayo.edu and I will connect you. I am happy that you found each other on the blog.

Sheryl Ness

April 7, 2013 3:21 p.m.

I was diagnosed with Waldenstrom's macroglobulinemia in 2004. Paulette, I read that you were diagnosed with WM. I would be delighted to communicate with you about this rare blood cancer! Maybe Sheryl can get us in touch with one another. I look forward to hearing from you, Paulette! Thank you, Sheryl!

Eunice

March 25, 2013 4:35 p.m.

I have been diagnosed with Waldenstroms and would like to communicate with others having this type of leukemia

Paulette

March 20, 2013 12:53 p.m.

Hi!
I have adenoid cystic carcinoma behind and below my eyeball. After 11 radiation treatments I had to quit due to inability to breathe through my nose, swallow and taste food, etc.
I am pursuing info on Factor 35 Flaw and the MYB gene expression.
Not sure how rare I am, but am a great believer in sharing information.
Take care everybody,
Merle

Merle

March 18, 2013 10:46 p.m.

i have lms (leiomyosarcoma) currently terminal metastatic pulminary. they gave me 2 years to live a year and 3 months ago. i agree about the fact that rare cancers dont get as much funding for research i understand why, but it seems so unfair... recently did a clinical trial (a drug that has been approved around the world for years) and was booted because 1 of my 40 some tumors grew by 12% i felt like i should have been given more time for it to kick in. that if the drug shows anything but positive effects you got to go fast! all the why's and how's and could have's i have gone thru in my head. i did have my original tumor removed at mayo it was in my ivc and they did a great job. it gave me 2 1/2 years more then if we had done nothing or if we hadnt found it at all so that is a daily reminder to be greatful. im on a growth inhibitor pill now that was recently approved for soft tissue sarcoma it has worked for 3 months so far. i would do anything to help with the research on this cancer i just wish there was more out there....

Amy

March 18, 2013 4:13 p.m.

Hi Sherly,
Re: Hairy Cell/Nan
Sorry but I'm having problems getting to your email. Could you post a live link? Thanks Jeff

Jeff

March 18, 2013 10:27 a.m.

I am one of those special one with a rare cancer, Thymic Carcinoma/Thymoma. I put both down because some of the Dr.s I see call it all Thymoma thinking there is no difference as they both originate from the Thymus gland and that is if they have heard of it at all. Many healthcare professionals I have had contact with have never heard of it let alone understand it. I have done hundreds of hours of research on my own but the stumbling block I have run into is that the few that are doing research ( AND THAT IS VERY FEW ) all feel there treatment protocol has merit and many are conflicting.
It is annoying to see hundreds of millions being spent and raised each year for the more common cancers but nothing being done by the drug companies for rare cancers. Simple economics dictates our care. Drug companies and most hospitals are for profit organiztions and there is no profit in spending millions on research to benifit the few. If a protocol is established it is usually prohibitivley expensive.
walking in the door for my check-ups can cost between 150-250 thousand dollars and they want me to be seen every two months. luckily we have good insurance but it still has almost bankrupt us. I apprecate the names of places to go for help someone posted earlier !! Thank You !! will give them a try. Anyone else out there with Thymic would love to hear from you !!!!!

Erin

March 18, 2013 9:27 a.m.

Jeff and Nan, it's so wonderful to make this connection with each other through the blog. Feel free to e-mail me at ness.sheryl@mayo.edu and I will send you each other's contact information!

Sheryl Ness

March 18, 2013 6:55 a.m.

Nan, I posted the comment before you. I have Hairy Cell also. If you want to talk, I don't know the protocol on this web site and would be glad to talk with you. I'm fairly well versed on the disease and may be able to give you some insights..Let me know.. Jeff

Jeff

March 16, 2013 6:55 a.m.

Sometimes,a fairly common kind of cancer is hard to detect.My late father was diagnosed with leukemia after nearly an year of tests.

sanjit

March 14, 2013 8:53 p.m.

I have hairy cell leukemia. I've met one other person with HCL. There isn't a lot of information on this type of blood cancer. I'm in remission, knowing it's treatable but not curable.

Nan

March 14, 2013 7:28 p.m.

Leukemia &amp; Lymphoma Society have people, like me, who volunteer to talk to anyone who is diagnosed with specific types like the one I have. It is rare form of Leukemia which only about 600 people a year are diagnosed with. I gladly talk to anyone diagnosed. It's rare but in the big scope of things those with it are very lucky. Rare doesn't always mean the worst kind..But, having doctors who see more of that particular case then others is important..Specialized chemos can have different side effects and having experienced doctors, familiar with your particular disease is important in my book.

Jeff

March 14, 2013 6:20 p.m.

I will jump in here. Isn't it true that we are all unique in our diagnosis due to the fact that each of us responds to the treatments differently. In my case, I have a constant backache and side ache. They tell me it is metastasis of the breast cancer from fifteen years ago but yet each report comes back saying that there are spots on my spine but some of them may be arthrites. I find this very frustrating. Do I have to live with this pain the rest of my life? I am functioning reasonably well but hate going to bed as the pain increases. I am not sure of what is happening. And when we se hear for the rest of our life for treatment what does that meann&gt; Does it mean for one month, one year or ten years. It is very depressing and scary. You got it one of my down-sad days. I am reading and see on the tv news that there are medicines being brought on the market everyday. Therefore, I am greatful for the time it may give me if my oncologist chooses to use it. So, the question is do I or do we all have rare cases of cancer. I believe so. The only way I can comment is to keep the Faith and also one day at a time. That is how my doctor ends our session each time. My question is what does it mean.

Anna

March 14, 2013 5:12 p.m.

Hi, youall thought I would comment since its empty. Large grats to you Sheryl for your blog. It sure has been a blessing just reading this stuff since my diagnosis. I find the best solution in one day at a time and live in the now. Thats all I get and just keep the faith, regarless of the outcome. To all fellow travellers on this journey may we all put on a courageous battle to our destiny. Keep in mind there is always better days ahead.

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